So in late September/early October I went to Chicago for a work conference. I brought my staff with me and I think everyone was looking forward to it. I’d never been to Chicago before, so if I had any free time during the conference, I was gonna spend it exploring the city! Of course, I drank lots and lots of coffee and ate some amazing food. I got to see some beautiful art and learn about the city’s history. I visited the Cloud Gate and took the necessary selfie with it:
It was such a cool city. But here’s the rub: I almost missed a lot of what made it really cool. See, the way I got around the city was either through public transportation or my own two feet. So off I went, armed with my Transit App and the maps on my phone. I was pretty proud of myself getting off one train, then getting on a bus, and making it to one place or another, whether it was the Museum of Mexican Art or to have some amazing Puerto Rican food in Humboldt Park. But I was walking towards dinner one evening after walking around Wrigley Field when it hit me – I’m walking through this city looking down at the map but I’m missing the stuff I’m passing by.
Now don’t get me wrong, this isn’t a post about putting your phone down. Not at all. I had my phone out because I didn’t wanna get lost in a strange city and end up paying a fortune to uber myself out of it. There was nothing wrong with using my map app; rather, I was on a 1.5 mile walk, basically in a straight line! I couldn’t get lost if I tried! So I decided to just hold the phone down at my side and look around a little bit. And then I saw it: a cool mural here, a fun store over there, and hey look at that cool building. I started to notice the details of what makes Chicago – in my opinion – a really cool city. It’s got lots of character in the architecture, the culture, and the people. And if I stayed glued to my map, I would’ve definitely arrived at my destination, but I would’ve missed what was on the way.
So what does this have to do with being a Heart Dad? Hear me out:
How often do we overlook the cool details on this journey? How often do we let this beast that is CHD consume our focus to the point that we miss small victories?
Here’s a recent example: the other day at bedtime Nolan asked me for a drink. At first I thought, “Stall tactic!” of course. So I went downstairs and, grumbling, grabbed his cup with chocolate milk and brought it up to him. I sat there beside his bed as he held the cup in both his little hands and drank all the milk through a straw. And it then occurred to me, much like it did on the streets of Chicago: yo, this kid – the one who at one point couldn’t move his hands or arms, the one who ate or drank nothing by mouth – is sitting here in his bed, holding his cup and DRINKING! What an incredible reminder of the amazing things he’s been through, about how – at this moment in time – he is winning big time! It made me smile outside and I inside I was downright glowing, And to think I could’ve missed it.
And you guys, I also believe it can be easy to merely be focused on the far-away things, like our kids’ CHD itself. I’m not saying don’t ever think about it; frankly that’s impossible. I’m saying don’t make that the only place you choose to look. Check it out, I’ve had plenty of times where my brain is like “OHMYGODWHATIFHENEEDSATRANSPLANTICAN’TAFFORDIT!” And I get it, we’re only human, and we have this incredibly beautiful – and fragile – life to care for. But please, please, please don’t miss the smiles, the laughs, the funny stories, the hand-holding, the head lean on your shoulder, the bedtime stories, the bathtimes, the singing and dancing, the eating, the playing, the running, and the jumping. Your child has been through so much, don’t let the destination be the only thing you watch; there are so many incredible things to see on the journey.
So today, this week, this month, take some time and really look at what cool things you find on your journey. Remember to celebrate those moments that previously may not have been possible. I don’t know what your situation is, but I know it’s not easy, and I’m hoping that this little exercise helps you find some joy, some peace, and some hope along your way.
Hey Friends! I know it’s been a long while but I felt like it was good to let the summer just kinda come and go without worrying about blogging…looks like it spilled into the fall. Whoops! Sorry about that. Anyhow, it was a good summer and the BIG thing coming up for both Nolan and Grant was…THE START OF KINDERGARTEN!
Nolan did really well finishing up pre-k at one of the local public schools: he had an amazing teacher and assistant and we’re so thankful for their loving patience with him and their ability to get the best out of Nolan. His obsession with the ABC’s has made him an amazingly-good reader, but there’s still a lot of things he needs to work on, mainly writing and cutting. More importantly, we had to meet with his new school (our actual neighborhood school) to review his IEP plan in regards to things like classroom socialization, physical therapy, occupational therapy, etc. The school was very gracious and accommodating and they even had a kindergarten teacher go to his pre-k class to hang out with him and evaluate him in action. She seemed to love Nolan (who wouldn’t?) and hoped she’d be his teacher. They planned to carry on all of the needed therapies there at the school. Nolan and Grant both did their kindergarten assessments in July and then it was just a matter of shopping for school supplies, school clothes, and all that fun stuff.
While Nolan has shown improved eating with his new feeding team, he’s still on the g-tube and we had to go over some feeding stuff with his school, so we requested a meeting to develop a 504 Plan. Again, the school was amazing and scheduled a meeting the Friday before school was supposed to start. His teacher (who was the one who evaluated him, yay!), the Assistant Principal, the School Nurse, and others were present and we were able to tell them why it’s so important for Nolan to remain hydrated AND why it’s important for him to get a good number of calories in his day. We talked about his heart and everything he’s been through and told them they’re a big part in helping him succeed at eating by mouth. We also talked about using the g-tube if he wasn’t drinking well and warned about the g-tube being accidentally pulled out. The plan was if he didn’t drink a certain amount by lunch then the rest in his cup would be given via the g-tube and the school nurse would show the teacher how to use it. I think that stressed out his teacher A LOT, and we did our best to calm her down and give her the confidence that all would be well…not to mention the school is literally across the street from our neighborhood, so my wife is super close if they need her. The plan was in place and then we spent the weekend prepping for the big first day!
I’m sure a lot of you reading this have either been nervous about the start of school with your heart kid or are getting nervous about school coming soon. Trust me, I was there too. I was always wondering whether this was the right school for him, whether he’d be safe, whether he’d behave, whether he’d fit in, etc., etc., etc. But the reality is this: we did everything we could have possibly done up to that point – we discussed all the issues with his school, including the IEP and 504 plan. We talked to his teacher and principal and made ourselves available for whatever. The next logical step was to walk up to the school and hand our little boy off to his teacher…
So the day finally came. Our little Nolan; the one who survived 3 open-heart surgeries, the one who required multiple attempts at chest closure, the one who endured so much therapy just to sit, stand and walk…Nolan had his first day of kindergarten:
I mean look at this kid! I was so proud of him AND Grant. This was their time to shine and to kick off an amazing school year. They had a step-down week for their first week, so they basically only went for one day, but it was an exciting day. We drove to the school, parked, and walked our boys in to their separate (for the sake of their poor teachers lol) classes. I gave Nolan a big hug, told him I was proud of him, and told him to have lots of fun. And then we walked away.
At first I was nervous, worried, excited, anxious, all of that; but it eventually went away. I took the day off from work, and all the kids were at school and everything was quiet…Awesome! We went out for a little bit and just enjoyed some time together…until the school called.
After a brief second of dread, we found out it wasn’t an emergency, it was just that Nolan was being stubborn (imagine that) about drinking his chocolate milk and the teacher didn’t know how to use the g-tube yet and could we help. No problem! So we drove back to the school. Honestly the big worry was that Nolan would see us and wouldn’t want to stay in school. He’s kinda a homebody and we thought for sure that’s what he would do. So we got to the school, got visitor badges, and went to his classroom…and there was Nolan, happily sitting at his spot at the table painting with his favorite color, red. He looked up at us and rather nonchalantly said, “Hi Mom and Dad, look I’m painting.” And we walked up and asked him if he’s ok and all of those thousand questions and he basically acted like we weren’t even there haha that little troll. We tubed him the rest of his milk, and gave him a kiss and he was essentially like “Go away, I’ve got this.” and as we walked out of the class we could hear him singing his phonics song with his class, “The snake is in the grass, the snake is in the grass, ssss ssss, the snake is in the grass.” Everything was ok, and everything was going to be ok.
School years are a marathon, I know it, and there will be easy weeks and difficult ones; but I think Nolan is in the right place for him – his teacher is super sweet and kind and he loves learning his letters and numbers. I know with our heart warriors it’s never as simple as sending them off to school – there’s so much to plan for, so much to worry about, and so much to explain. One that’s all done, though, keep an eye out – your kid will definitely surprise you! Here’s to a great year, kiddo.
Do you remember this joke (I use the term joke loosely) from your childhood?
Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?
Person 2: Re-Pete.
Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?
Person 2: Re-Pete.
Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?
Person 2: *Mauls Person 1*
Bruh. I know some of you just read that and came to the crushing realization that this joke has become a lot like your life, because you have small children who – let’s face it – can’t listen to save their lives, or just the daily act of being a Heart Parent is a lot of the same stuff over and over and over again. Ah, repetition. Don’t we love it?
If you’re anything like me, repetition is a struggle. My grandparents, at points throughout their lives, worked at factories and sometimes I think about that and can’t imagine doing that kind of work – standing in one spot, doing a repetitive task over and over again until I can go home. I would lose my mind. But hey guess what…Heart Dad life can sometimes be like it too. My struggle is often with the pharmacy: I use the pharmacy here at work because of the convenience and since the cardiology office is right next door in case I need any questions answered. But eeeeeeeeeevery month it’s the same thing for one particular med, and it goes like this:
Me: Hi I’d like to call in a refill for my son’s medicine *gives name and birthdate*
Pharmacy: Ok, which med?
Pharmacy: Um…it says here you’ll need to use the mail order pharmacy for that.
Me: Yes, I know, but I’ve talked to them and they can’t do this med, so I need you guys to do it.
Pharmacy: Are you sure?
Me: Yes, I’m sure…been doing this same call for months.
Pharmacy: Well let me call them and find out and I’ll call you back.
Me: *screaming internally* ok
*15 minutes later*
Pharmacy: Ok, we’ll have it ready at 2.
Dude. Same thing. EVERY. SINGLE. MONTH. It really used to make me go guano as I have to repeat the same thing over and over every single month. Whenever I pick up the phone to call in this med, I know exactly what will happen. But repetition is everywhere: every month call in new feeding supplies, keep track of meds to call in refills in time since they’re closed on weekends, give meds at 6:30 then 2:30 then 10:30. On and on. Repetition is everywhere in our lives!
Why does repetition make us nuts? Well it’s because it can be monotonous, it’s the opposite of spontaneity and sometimes feels a bit confining. We want to spread our wings and do whatever, whenever…right? Right? But check it out: nature…the very universe itself…is repetitive, and no one freaks out. The sun rises, the sun sets, Earth turns, the seasons change, etc. And this repetition is important to us…if it didn’t happen, we’d freak out and it’d be pandemonium in the streets!
Let’s face it, friends…for a lot of us, the repetitive nature of being a Heart Parent won’t go away anytime soon. There will be meds to give, tube feeds to do, treatments to complete, appointments to go to, refills to call in. I think we can all make an effort to change the way we view these repetitive tasks:
Add Something Positive to the Experience: so if you gotta do it, make it purposeful and a win for everyone. When I give Nolan his feeds at night, it’s easy to see it as just part of the daily routine, but I’ve started using that time to just look at him and – even though he’s asleep – whisper to him that I’m proud of all he’s accomplished. For those couple minutes I can celebrate who he is, and that always makes me feel good, as opposed to “Lemme finish this so I can move on.” Or when I go pick up his meds from the pharmacy: I try to chat up the team if they don’t have a long line. A smile, a “hello,” and a “how’s everything going today?” goes a long way towards helping you not become the “here he comes again” guy.
Remember The “Why” Behind the “What”: as mind-numbing as this can sometimes be, it’s all for a purpose. Your kiddo needs the meds, needs the feeds, needs the appointments. It’s all part of the job of protecting them and giving them the best shot at a great life!
Pat Yourself on the Back Sometimes: don’t get a big head about it, but you know what? You’re doing a really good job…tell yourself that every now and then. You’re playing your part in making this happen and keeping your kiddo as healthy as possible, so give yourself a little bit of grace. You’ll always be ready to go back for more when you feel good about what you’re doing.
Embrace it, Don’t be Resigned to it: there’s a huge difference between “this is my life and I’m gonna learn to work with it” and “*sigh* I GUESS THIS IS MY LIFE NOW.” I get it, sometimes you can feel both, depending on the week or how much you’d have to deal with the kids smearing mystery goo all over the house. But if you can embrace the repetition more than you just get resigned to it, you’ll find it much less of an inconvenience. It’s the new normal, remember? I know it’s not easy, but just try!
Keep your head up, friends. I know sometimes the repetition gets crazy and I know it’s turned your life upside down. You can’t go out like you used to, can’t just get up and go, and your calendar is full of reminders about meds and dr appts and whatnot. I’m not trying to say “just deal,” that would be callous of me…we gotta work with what we got, but we also have to change the way we look at what we’ve got. You can do this.
So I’ve been writing this blog for a few years now and in it I’ve talked about our journey with Nolan, the ups and downs of being a Heart Dad, I’ve offered encouragement and all that good stuff…but it’s occurred to me that I haven’t spoken once about a superpower that lives within all of us Heart Dads. Is it super strength? No. Super speed? God no, I run like a drunk sloth. Intelligence? My high school math teachers will tell you otherwise. No, the superpower we have is…
THE DAD JOKE.
Now that the kids are all relatively school-age, this power has begun to manifest itself in my household, in the car, in the grocery store…heck, wherever. Much to my joy and my kids’ chagrin. My oldest, Hudson, is usually on the receiving end of the Dad Joke(s) and the resulting cackling that follows them, often to the point where I’m coughing from laughing at my own joke. Sometimes I spend days focusing on a theme…lately it’s been pirates and it’s been like this:
Me: Hudson, where does a pirate grow his vegetables?
Hudson: I don’t know.
Me: In his gARRRRRRden! *laughs loudly*
Me: Hey Hudson! Why does a pirate like reading magazines?
Hudson: For the articles.
Me: NO! For the ARRRRRRRRRRRRRRRticles! *laughs louder*
Me: *singing loudly* In the naaaaame of looooove. Before you break my heAARRRRRRRRRRRt!
And on and on. I cracked up just typing it out. So what’s the deal with me writing about Dad Jokes?
May is Mental Health Month and while it’s coming to a close, I really wanted to write about it since mental health is so important for us as Heart Dads. And you know what? Laughter is actually really really good for your mental health:
It Makes You Happier: I mean, duh…I’ve never seen a cranky person cracking up laughing. It can instantly lighten your mood.
It Releases Good Hormones: when you laugh, you release dopamine and serotonin, which make you feel really good and helps battle things like depression.
It’s Good for You, Physically: laughter burns calories! Now hold up: don’t cancel your gym membership…it’s not a ton of calories, but it helps nonetheless. So laugh away!
It’s Good for YOUR Heart: listen, we spend a lot of time focusing on our kids’ hearts, which is of course very important, but we need to pay attention to our hearts too! Laughter helps with blood flow, which is really good for your ticker.
It Helps You Be More Social: laughing with someone or a group of people always makes you feel better and develops a special bond and relationship with is so helpful for our mental health. Whenever I get together with my best friends, we tell the same stories and laugh til our sides hurt, every single time. And I wouldn’t trade that feeling. It always makes me feel good and I love them for it.
So Dads, get out there and drop a corny joke, or three…laugh…make others laugh. Watch a funny movie, fire up Netflix and catch a standup comedy special. Anything. Just laugh. We deal with so much heavy and serious stuff that I think this is the first to fall off…don’t let it. There’s an appropriate time and place for jokes and laughter and I trust you to know when that time is…and when that time comes, don’t be afraid to use your superpower to make others – and yourself – laugh. Do it for you…because a better you is better for everyone else!
I also realize that not everyone who is reading this is in a place where laughter is possible or appropriate. You’re going through some difficult, heavy things and you’re just taking it day to day. Please know that I understand and that I support you and any of my friends who read this can reach out to me for a supportive ear. Please know that I have a lot of other posts on here regarding mental health that could help you:
Stay strong! You’re not alone.
I’m gonna share a story of a mistake I made. Maybe you’ve made the same one, maybe not, but here goes. There’s a particular medicine that Nolan takes around 4pm everyday and we’re really good at not missing it or anything like that. So sometime last year I came home from work and literally saw my wife giving Nolan that particular medicine. About 30 minutes later I had one of my patented Chris Perez brain farts. It suddenly occurred to me, “Hold up, we didn’t give Nolan his med!” So I drew some up and gave it to him. Bam! Go me! Right? Right? Nope. I told my wife, “Hey I gave him his 4:00” and she was like “Uh…I already gave it to him”…and then suddenly it felt like I was hit by a bus. OHHHHHHH NOOOO….what did I do? WHAT DID I DO?! Ohmygodohmygodohmygod he’s gonna get sick and it’s all my fault!
So I got on the phone and frantically called the cardiologist, all the while feeling incredibly guilty. He told me not to worry, just to skip his evening dose and – you know – don’t do that again. Crisis averted. Nolan was 100% fine. Me? Not so much. Because you know what happened, and maybe you’ve been there yourself: the self-talk begins. You big dummy. How can you let this happen? This is your kid, you could’ve killed him. Don’t be so stupid next time. And on and on. Yeah, you’ve been there too, I bet.
Self-talk is a really fascinating thing because we can often use it to encourage ourselves, drum up some bravery, and push ourselves to better places. But quite often our self-talk is just an effort to sabotage ourselves. Want to know the person who tries to cut you down the most? Look in the mirror. Harsh, I know…but you know it’s true. But I learned something that helped me think a little more about my self-talk, and it came from my job. So one of my responsibilities is to conduct orientation for all new hires at the hospital where I work. I actually kinda enjoy it and use the opportunity to tell Nolan’s story in an effort to teach teammates to use empathy more. One of the best parts of orientation, though, is when our Chaplain comes to speak to the group about Compassion Fatigue. You’ve read about it here on this blog (if you haven’t, read it here) and you know that I think it’s so important. Anyways, after this medicine mix-up happened, I was standing in the back of the auditorium listening to this portion of the orientation and the Chaplain said something that really helped me see things differently.
He was talking about self-talk and how harsh we can be on ourselves. He asked this question that really stopped me in my tracks: “If your best friend messes up or makes a mistake, would you talk to them the same way you talk to yourself when you mess up?” and I was like WHOA. This is incredibly true: I’d never talk to my best friend the same way…I’d try to be encouraging and supportive and give him a pep talk. Me? I’m the moron. If I talked to my best friend that way, he’d really dislike me. Big time.
So this really made me think about how I talk to myself. Because listen: you’re going to screw up…we’re not perfect people, we’re not perfect parents – and when you add a CHD into the mix, well…it just gets even more bonkers. So I think we owe it to ourselves to watch how we talk to ourselves. We owe it to ourselves – and our kiddos – to be the best version of us we can be, and that includes mentally. If we cut ourselves down for even the tiniest of mistakes, that only makes us feel worse about ourselves and in turn contributes further to our Compassion Fatigue. And before we know it, it’s a vicious cycle.
So before you start beating yourself up, stop for a second and think about whether you’d talk to your best friend – or even your own kid – that way. And consider changing the way you talk to the man in the mirror. It’s bound to be better for your mental health and I think you’ll find out you can accomplish way more when you encourage yourself!
Keep being strong, heart parents…you got this!
Hey friends, I hope all is well in your world and that you’ve enjoyed your holiday season! It’s really hard to believe that 2017 is almost over: the final bit of this year was really eventful so I wanted to give a bit of an update on what’s going on in our world.
Party Time, It’s Excellent
I’ve always enjoyed the month of December because it’s always had my favorite holiday in Christmas. Since the twins were born, though, it’s given us even more opportunity to celebrate! This year the twins turned 5 years old and I just love celebrating their birthday, especially now that they’re starting to get old enough to be more and more excited about it. Not to mention that every birthday with Nolan is a really big one! We went to each of their schools to celebrate their birthdays with their classmates. Nolan didn’t want cupcakes for his class, however…in true Nolan fashion he wanted to share some Scrabble Cheese-Its with his class. Remember, this kid is obsessed with the ABCs, so of course! It was so cute to see him in school interacting with his classmates. We got to feed him and see excited his little friends were to get their crackers. It was really cute and it made Nolan happy. We even asked him if he wanted us to take him home early and he said no thanks, he wanted to stay in school. I’m so proud of him…he’s going to school from about 9:30am to 2pm and he’s totally rockin’ it! Grant, on the other hand, had his birthday celebration at school complete with cupcakes and it was so much fun to see him and his classmates with frosting-smeared faces. Too cute! We followed it up with lots of other celebrations with family and friends and, of course, at home. On their birthday I always want to just scoop them up and squeeze them…because I’ll never forget how absolutely insane their first day on this planet was. And I’ll never forget how much they’ve both been through, and I’m eternally thankful.
Happy Heart Day, Nolan!
A very important day of remembrance for me is December 17th, which is when Nolan had his first heart surgery – the Norwood Procedure…now 5 years ago. I always spend time on this day remembering how I felt: on one hand it’s kinda like punishment because I remember being so scared, to the point of paralysis…but to me it’s important to connect with that feeling from time to time. I don’t wallow in it, but I do talk about it with people. Most importantly I look upon that day as the start of Nolan’s heart journey, and I remember how much he’s been through and I look – with joy – on the strong little guy he is today. And when you look at it that way, you can’t help but to be so happy to celebrate his heart day:
Christmastime is Here!!!
Man, Christmas with 3 little boys is totally bonkers, and the craziness began like a week before the actual holiday, as we celebrated with other family and friends. So the kids were definitely ramped up for the actual day! It was so fun watching them rush down the stairs and to be so excited by the gifts that Santa (and mom and dad) got for them. I love the smiles and the laughs and the hugs. And hey, we even got a decent pic with Santa:
And Lots of Other Good Stuff, Too
Lots of other good stuff happened in December too. We had another feeding appointment at UNC and it went really well: Nolan has really cut back on the vomiting (to nearly nothing, knock on wood) and is eating purees more regularly and eating things like Cheese-Its, Rice Krispies, and some mashed potatoes. Definitely a huge move in the right direction!
Nolan also had a really great cardiology check-up: his doctor said his heart function looks really good and we won’t be back for another 6 months or so!
After Christmas we took the kids to a trampoline park to play with some friends. As you know, Nolan looooooves trampolines and jumping, so he was very excited about this. Shockingly, though, he spent the most of his time “going on an adventure,” as he calls it. This meant he climbed up, through, and around this huge playground structure inside the trampoline park. I mean look at this kid:
I was standing like 2 levels below him when I took this picture. He proceeded to climb way up and go down the long, twisty slide all by himself. Why is this significant? Well after Nolan’s Fontan Procedure, I noticed that he was developing some fears that he didn’t have before. When we’d go to any playground, he no longer liked to climb up like he used to and he definitely didn’t like to go down slides. At his first parent-teacher conference at school, his teacher mentioned how much Nolan loved getting on the playground and going down the slide…and I was like “Hold up…are we talking about the same Nolan?” Apparently the Physical Therapist at school has been working with him on this, plus seeing his friends play has spurred Nolan to do the same. And you should see this kid go! Off he went on his “Adventure” and he even told me I didn’t have to go with him. Definitely a proud daddy moment for me…it really symbolized how much progress he’s made. Keep climbing, big guy!
So to all my friends reading this, I hope this year was a really good one for you. And if it wasn’t, I hope 2018 is a fantastic one for all of us. May your new year be full of love, kindness, gratitude, victories (however big or small), empathy, and compassion. Don’t let the little moments pass you by without being thankful, don’t forget to take care of yourself, don’t forget that the work of your hands is sacred, and don’t forget to give lots of big hugs.
And finally, in case you need a random smile, and the days get a little rocky, you can always do what Nolan does – dress like an owl and dance to Laurie Berkner:
HAPPY NEW YEAR, EVERYONE!
Well November is finally here: the time of year where the temperature starts to drop a bit, the Halloween decorations get put away, and kids start to develop the all-to-familiar tickle in the backs of their throats which send us Heart Parents into a small panic. But most importantly, it’s the month where everyone makes an effort to stop and give thanks. While I agree that we should be thankful all the time (in fact, I encourage it), I was hoping to share a story with you that’ll help you remember to be thankful this month and beyond.
So if you were to ever meet Nolan, you’ll learn that when he gets into something he really gets into something. Whether it’s the alphabet (forwards and backwards), numbers (counting to 100 by 10s!) or the musical stylings of Laurie Berkner or They Might Be Giants, he can get kinda obsessed. Well several months ago he was watching an episode of Paw Patrol, one of his fav shows, and this particular episode was about a family of owls. Now this sounds like no big deal…but something about the owls struck a chord with Nolan and he went owl crazy! But oh no no…this was not merely, “Hey Dad, can we watch the owl one again?” No, friends…this became Nolan calling himself an owl and hooting…
Oh sweet baby Jesus, the hooting…
When I came home from work: “Hey Nolan!”…”HOOOOOOT HOOOOOT!”
Going to bed: “Goodnight Nolan.”….”hoot”
And that became hooting along to music in the car, hooting to random people, and hooting to his teachers at school.
I thought that surely this was a phase, but in true Heart Warrior form, he was not lettin’ this one go. And the hooting started to make me a little crazy, to be honest. I tried all sorts of things: “Nolan, Daddy is not an owl”…”Nolan, Daddy doesn’t speak owl”….”Nolan, please STOOOOOP”.
Well….he still hoots haha but not as much. And, as you can imagine, he wanted to be an owl for halloween. My wife, being awesome like she is, made him some really awesome owl wings and we found him an owl hat and some cute fake glasses that he loved:
Is that kid cute or what? And it also gave him an opportunity to hoot all he wanted while trick or treating…it was pretty awesome for everyone involved. But it was something that happened after halloween that helped me be more accepting of the whole owl thing…
It was a Thursday evening and I was coming back from kickboxing class. It was sparring night so I was feeling beat up (literally) and I had to stop by the grocery store before coming back home. Our house is on an alley and I parked in the back…instead of going through the yard I decided to go down the alley and go through the front door. As I reached the end of the alley, just around the corner of our house, I saw what I thought was a woman with long hair standing on the sidewalk in front of our house. I stopped and peered around the corner to discover that I actually wasn’t a person…it was a massive, real-life owl sitting on our mailbox! WHOA. So I crept up a little closer asking myself if I was really seeing an owl or if I took too many punches to the head. Sure enough it’s big ol’ owl head swiveled around and looked at me and then it flew off to the neighbor’s mailbox. I don’t know why, but my heart was pounding…I went inside and told my wife to come out quick to see the owl. Shortly after it flew away into the night. The crazy thing is our neighborhood doesn’t have any trees that are owl-friendly, so this guy had to come a bit out of his way to hang out on our mailbox. Crazy!
This sounds corny, but in my heart it almost felt like that owl came by to visit his goofy little friend Nolan…or at least that’s how I liked to view it. I was really excited about the owl…and then I became ok with Nolan wanting to be his own little funny owl self. It really made me think of a fantastic quote by Charles Spurgeon:
“We are too prone to engrave our trials in marble and write our blessings in sand.”
In our life as heart parents there is a lot to be upset about, a lot to be frustrated about, a lot to lose hope about. And it’s ok to feel that way…but I do think we all too often choose to take those feelings and put them in a permanent place in our lives while all the good things, the small victories, the smiles, are written in sand, only to be washed away while the harsh feelings remain.
So yeah, the hooting can sometimes get to be too much…but honestly over time he’s doing it a little less and less. And he makes a really cute owl…and you know what? Owls are kinda awesome. And if he wants to be an owl, Nolan can be an owl. Know why? Because I need to learn to see the things I’m thankful for…the fact I can hold my little owl’s hand and take him trick or treating. It’s a reminder- as always – of how far he’s come…and a reminder that I need to engrave my blessings in marble…not just my trials.
I hope this brings you a little bit of encouragement this Thanksgiving season!
Also (and this is TOTALLY coincidence), our good friends at the Pediatric Congenital Heart Association have started a new campaign called Be #CHDWise, which features…you guessed it….an OWL named Echo:
You can get your own Echo the Owl or a dope t-shirt, and read more about the campaign on their website. Be sure to also follow the hash tag #CHDWise on social media so you can help people “Give a HOOT about CHD!”
(PCHA, you guys are awesome!)
Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around. This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!
Yes, Nolan is finally getting back into school. After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all. I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic. So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home. Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.
We decided to apply for an early-childhood preschool program through our local public school system. Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan. Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).
I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan. He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible. This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro. They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him. I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting. He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on. WOW. The next meeting was with the school nurse to go over his needs and care, The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc. I was really, really impressed.
So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does. All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him? One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion. First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about. He had other thoughts. He looked around and said to my wife, “Well this is disappointing.” LOL This kid!
His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan. The teacher would also have an assistant in the classroom. We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME. ]
So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.
Yes…in true Nolan fashion, he caught a cold the weekend before the start of school. I was like:
So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third. And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!
I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:
Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:
For me it was such a big, moving moment. I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life. And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy. And I couldn’t be more proud of my superhero.
We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room. There was playing! And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.
In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others. This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight. This handoff signified that Nolan is beating the odds!
He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there. He’s also been more of a chatterbox since starting school, which I really like. And – as always – Nolan is super silly! We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!
For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be. Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k. I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok! They’re all different in their own awesome ways, so embrace it. But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied. Ask questions…LOTS of questions. And then ask them again if you need to. Get your child’s doctors involved. Develop a good IEP plan with your child’s school so that you have all possible bases covered. Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!
If you ever meet Nolan and spend more than 15 minutes with him, you’ll know that there are things that he likes, and then there are things he is obsessed with. Paw Patrol? Oh he likes Paw Patrol…sometimes a little, sometimes a lot. ABCs? OH. MY. GOD. It’s his favorite thing on the entire planet earth. He’ll watch alphabet videos on YouTube for hours, his favorite toys are alphabet-related, etc. He’s crazy about it. Then came numbers. Of course, we can’t forget his best friend Monkey. Now there’s something else to add to it: jumping. This kid loves to jump and it seems like lately that’s what he likes to do: he jumps on each letter of his alphabet mat (because of course), he jumps whenever I’m holding his hand and we’re walking somewhere, and he even jumps when he’s happy about something. Example: I’ll ask Nolan if he wants to watch Paw Patrol – he’ll squat down low and spring up into a jump saying “YES!” He especially loves jumping on trampolines:
Look at that kid catching some air!
I love it, though…he’s super cute when he jumps. We recently found someone nearby who was giving away a 7-foot trampoline so I picked it up and put it in the back yard and it was like Christmas for Nolan. He can jump on it all day (of course he goes through his alphabet forwards and backwards and counts to 100 while jumping)…and he won’t get out of it without a fight.
Now Nolan isn’t getting some kind of crazy vertical on his jumps, but watching him jump even a little bit off the ground really struck me as symbolic. Maybe the space between his feet and the ground is only 6 inches or so, but that space speaks to years of hard work at physical and occupational therapy.
I remember the early days of Nolan struggling to sit up on his own, then trying to crawl. The crawling was so hard: he’d cry and scream and it was so tough to see him that way, especially with all he’d been through. But eventually he crawled, then he stood, then he walked. Since then Nolan has progressed to going up and down stairs and, yes, jumping. Lots and lots of jumping.
And when he jumps, the space between his feet and the ground brings a smile to my face. I like the space between: it’s a good reminder of a little boy who faced major odds and kicked some butt. I think sometimes we (myself included) as heart parents get caught up in the what might happen part of our journey. Will there be a transplant down the road? More surgeries? Will the liver be ok? And we worry ourselves sick. Sometimes we need to hang out for awhile in the space between. Or at least admire the space between and what it represents.
For you, the space between might be one less medication, it might be one less surgery, it might be a clean echo or cath, it might be your baby finally talking or walking…it might be a little boy jumping with all the joy in his heart. Whatever it is, please take time to appreciate the space between. I’m not saying don’t worry about anything…we’re always going to worry…but instead look for the little symbols of victory in your heart warrior’s life. They can be so easy to miss, but so powerful once we see them for what they are. For your own sake and your own mental health, give yourself permission to see and celebrate the little wins. And by all means, celebrate your warrior for his or her victory over that thing that’s trying to hold them back: tell them you’re proud and let them feel free to smile, or even…jump.
There are many times throughout this journey where you’re faced with situations, appointments, and dates that seem like they only exist to crush you. The next cath, the upcoming surgery, the impending birth of your heart baby. Sometimes when life gets chugging along, you hit those speed bumps where you get frustrated at the unfairness of it all, and you get angry and life starts to feel like it’s swirling. It’s during those times where we crave some words of comfort and inspiration. I know that many of you reading this may be going through those moments right now, so I wanted to share something that inspired me, which came from an unlikely source (don’t you just love those?). So follow along:
Lately my kids have really been into the Disney movie Moana. We have the DVD and the soundtrack. I’m not complaining, though: I actually really like the movie and its music; in fact, it’s often stuck in my head. Not to spoil any part of the movie, but there’s a part towards the end where one of the characters seems like he is performing a Haka dance. Now you guys might be familiar with the Haka: it became popular over the last few years once videos went viral of the All Blacks rugby team of New Zealand performing the Haka before they begin each match.
If you haven’t seen it, it’s amazing:
So after seeing it in Moana, I ended up in a good ol’ internet rabbit hole where I started reading about the Haka dance and it’s meaning. So the Haka is a traditional Maori war dance performed before battle to display a tribe’s strength and intimidation. It’s an amazing thing to see and, yes, very fierce and intimidating.
So what does this have to do with us? Stay with me…
My interweb searching lead me to another popular video of the Haka being performed by groomsmen at a wedding. It turns out the Haka is also performed during special ceremonies and celebrations and to show reverence to others. The performance was powerful and moved the bride to tears. What I really wanted to know, though, was what on earth they were saying during the Haka. I did some digging and it turns out this particular Haka is called Tika Tonu, which was composted by a chief for his son, who was experiencing some difficult times around 1914. When I read the words, it blew me away:
What is this problem you are carrying?
How long have you been carrying it for?
So son, although it may be difficult for you,
And son, although it seems to be unyielding,
No matter how long you reflect on it,
The answer to the problem
Is here inside you.
WOW. Just WOW. I must’ve read this 20 times and it still moves me. You see, friends, what you’re facing is hard: handing your baby over to a surgery team, fighting with your insurance, scraping up money for another month of medications. Whatever it is, it’s hard and it may seem like it’s too strong for you and you don’t know where the strength is going to come from…but it’s right there…inside of you. Through the tears, the sleepless nights you endure. You don’t give up and I encourage you never to give up! The rich, the powerful, the connected – they can’t do what you’ve done so far. You haven’t crumbled under the pressure…and every morning that you wake up and get out of bed is another day that you’re fighting back and you’re winning.
So yes, while it seems unyielding, you are capable of much more than you even know…so keep fighting!
I love how much this spoke to me, and to think it all started with a Disney movie. I really enjoyed learning a little bit about this beautiful culture. Here’s the wedding Haka video (with translation) for you to enjoy (look how fierce that bride is when she joins in!):